For further information, please contact : W orld Health Organization
Department of HIV/AIDS CH-1211 Geneva 27, Switzerland
Fax : +41 22 791 4834; email : [email protected]
ISBN 92 4 159182 X
HIV/AIDS PREVENTION AMONG
INJECTING DRUG USERS
WHO Library Cataloguing-in-Publication Data World Health Organization.
Advocacy guide: HIV/AIDS prevention among injecting users: workshop manual / World Health Organization, UNAIDS.
1. HIV infections - prevention and control 2. Acquired immunodefi ciency syndrome - prevention and control 3. Substance abuse, Intravenous 4. Health promotion - methods 5. Manuals I.UNAIDS II.Title.
ISBN 92 4 159182 X (NLM classifi cation: WC 503.6)
© World Health Organization 2004
All rights reserved. Publications of the World Health Organization can be obtained from Marketing and Dissemination, World Health Organization, 20 Avenue Appia, 1211 Geneva 27, Switzerland (tel: +41 22 791 2476; fax: +41 22 791 4857; email: [email protected]). Requests for permission to reproduce or translate WHO publications – whether for sale or for noncommercial distribution – should be addressed to Publications, at the above address (fax: +41 22 791 4806; email:
The designations employed and the presentation of the material in this publication do not imply the expression of any opinion whatsoever on the part of the World Health Organization concerning the legal status of any country, territory, city or area or of its authorities, or concerning the delimitation of its frontiers or boundaries. Dotted lines on maps represent approximate border lines for which there may not yet be full agreement.
The mention of specifi c companies or of certain manufacturers’ products does not imply that they are endorsed or recommended by the World Health Organization in preference to others of a similar nature that are not mentioned. Errors and omissions excepted, the names of proprietary products are distinguished by initial capital letters.
The World Health Organization does not warrant that the information contained in this publication is complete and correct and shall not be liable for any damages incurred as a result of its use.
Printed in Switzerland
HIV/AIDS PREVENTION AMONG INJECTING
DRUG USERS
WORKSHOP MANUAL
Acknowledgements ____________________________________________
Introduction ________________________________________________ 1 Part 1. Principles of advocacy ________________________________ 11
1. Advocacy: overview and principles ____________________________ 11 Part 2. The advocacy process _________________________________ 23
2. Starting up ______________________________________________ 23 3. Analysis _________________________________________________ 32 4. Developing a strategy ______________________________________ 37 5. Action and reaction _______________________________________ 49 6. Evaluation _______________________________________________ 57 Part 3. Methods of advocacy __________________________________ 59
7. Use of research and evidence ________________________________ 61 8. Developing policy _________________________________________ 73 9. Community-based approaches _______________________________ 89 10. Working with mass media __________________________________ 95 Part 4. Arguments and resources ______________________________ 97
11. Core arguments __________________________________________ 99
12. Beliefs and attitudes opposing interventions _________________ 101
13. Resources _____________________________________________ 105
This manual was prepared by the International Harm Reduction Association (IHRA) and written by Dave Burrows, Consultant on HIV/AIDS and injecting drug use issues, Sydney, Australia. The following people edited the document: Andrew Ball, Monica Beg, Gundo Weiler, Richard Steen and Isabelle de Zoysa, Department of HIV/AIDS, WHO; Karl-Lorenz Dehne and Christian Kroll, Vienna Offi ce, UNAIDS; and Moruf Adelekan and Chris van der Burgh, UNODC.
A Technical Reference Group was established to assist in preparing this guide by commenting on various drafts and providing information, case studies and exercises. WHO, UNAIDS and UNODC acknowledge the contributions from and thank the members of this group: Larisa Badrieva, Anindya Chatterjee, Miguel de Andres, Karl Dehne, Martin Donoghoe, Jimmy Dorabjee, Chris Fitch, Tatiana Hicarova, Silvia Inchaurraga, Konstantin Ledezhetev, Annie Madden, Peter Markelov, Victor Marti, Palani Narayanan, Bill O’Loughlin, Sujata Rana, Gennady Roshchupkin, Timothy Ross, Sebastian Schmidt-Kaehler, Mukta Sharma, Komdon Singh and Emilis Subata.
WHO acknowledges the generous contribution of the Australian Agency for International Development (AusAID) to the development of this guide.
ACKNOWLEDGEMENTS
WHY THIS GUIDE?
T
he World Health Organization (WHO), the Joint United Nations Programme on HIV/AIDS (UNAIDS) and the United Nations Offi ce on Drugs and Crime (UNODC) developed this guide jointly based on a wealth of experiences by individuals, institutions and nongovernmental and international organizations on the role of advocacy in establishing HIV/AIDS prevention and care programmes for injecting drug users (IDUs). It builds on several publications on general advocacy and specifi c advocacy programmes for HIV/AIDS, which are referred to Chapter 13.HIV/AIDS among IDUs remains a neglected issue. Although policy-makers, programme planners at the community and national levels and international donors have paid increasing attention to HIV/AIDS in recent years, the specifi c epidemics of HIV/AIDS among IDUs and the response needed have attracted much less attention and funding. Efforts have been made within the United Nations to harmonize policies on global drug control and HIV/AIDS prevention and to build interagency collaborative mechanisms; however, country-level capacity to address HIV/AIDS among IDUs remains low. Prevention services remain extremely limited in most places. Care and support services frequently remain unavailable for IDUs and are not tailored to their specifi c needs, even where programming and funding for HIV/AIDS prevention has considerably expanded otherwise. A review of country responses in 2002 noted that IDUs tend to be excluded from highly active antiretroviral therapy, and often even from basic primary care, almost everywhere. An extra effort is therefore necessary to promote equal HIV/AIDS prevention and care among IDUs.
The purpose of this guide is to provide a wide audience with a systematic approach to such advocacy, which could be replicated and adapted to various cultural, economic and political circumstances. Part 1 outlines the general principles of advocacy for HIV/AIDS prevention and care for IDUs. This is followed by Part 2, a step-by-step process of establishing advocacy groups with specifi c goals; situation analysis; strategy development, including analysis of stakeholder and advocacy audiences; and implementation of action.
Part 3 contains descriptions of a wide range of tools and methods for achieving advocacy goals. It provides examples of their use in various country settings. Part 4 provides the most frequently used arguments related to HIV/AIDS prevention among IDUs and useful resources.
Not all advocacy methods work similarly in every social and political context;
these methods should be adapted to the specifi c social, cultural and political circumstances in which they will be used. Most methods described here could be used, after such an adaptation, at the community, district and national levels, and even in the inter-country context, such as at the regional and global levels.
They should be used at these various levels in parallel. Advocacy at the various levels interacts: for example, work at the national level affects the community level and vice versa, and policy changes at the global or regional level are often followed by national revisions in policies and practices.
A multi-level approach requires a combination of methods to be most effective.
For example, the best assessment is useless if the results are not properly packaged and made available to the various target audiences. All methods presented here and how best to combine these methods should therefore be considered to achieve each specifi c advocacy objective.
Many advocacy success stories related to HIV/AIDS prevention among IDUs have not used the systematic approach outlined here. If a group of people is well versed in advocacy on other issues and has access to infl uential individuals and groups, they will often not need to follow every single step in this guide but will be concerned with maintaining what has already been achieved. Other advocates may be less experienced or operating in societal contexts where advocacy is unusual or where there is little knowledge of, or interest in, issues around HIV/AIDS and injecting drug use. They may fi nd that closely following the steps outlined in this guide can lead to some early success, which can then lead to greater confi dence and further advocacy work.
The guide is, therefore, designed for individuals, groups, institutions and organizations throughout the world concerned about HIV/AIDS among IDUs that want to establish and maintain an environment in which HIV/AIDS prevention among IDUs can be implemented effectively. Depending on the local situation, these may include health professionals, lawyers, judges, politicians, public servants, prison offi cials, drug users and their families, former drug users, journalists and other people in the mass media, national and international nongovernmental and intergovernmental organizations and funding organizations. This guide is for use by any member of these groups or anyone else interested in ensuring that HIV/AIDS among IDUs is successfully addressed.
THE NATURE OF THE HIV/AIDS EPIDEMICS AMONG INJECTING DRUG USERS
HIV/AIDS epidemics among IDUs tend to manifest themselves very differently from epidemics in which sexual transmission is the main risk factor. Although sexually transmitted HIV may remain virtually invisible for several years until the burden of disease slowly increases, sharing of injection equipment is a much more effi cient mode of transmission, and drug-related epidemics therefore spread more rapidly. Once the virus is introduced into a community of IDUs, tens of thousands of HIV infections may occur. Infection levels among IDUs may rise from zero to 50–60% within 1–2 years, as demonstrated in cities as different as St Petersburg (Russian Federation), Imphal (Manipur, India) or Ruili (Yunnan Province, China).
The size of the drug-related HIV/AIDS epidemics that result largely depends on the number of people in a given location that regularly or occasionally inject (illicit) drugs and their risk behaviour. The size of the drug-injecting problem in turn usually depends on several factors, including the supplies of injectable drugs, such as heroin, amphetamines and cocaine; drug demand; and the patterns and norms of use among young people, such as whether drugs tend to be injected versus smoked or inhaled. Drug-related HIV/AIDS epidemics have followed the spread of cocaine injecting in Latin America and of heroin injecting in Asia in the 1980s and the massive spread of the injecting of heroin and other opiates in eastern Europe in the 1990s.
Injecting drug use has now been documented in 129 countries, 79 of which also report HIV transmission through contaminated needles, syringes and other injecting equipment. About 13 million people worldwide inject drugs, and about 10% of all new HIV infections globally result from the use of contaminated injecting equipment by IDUs. In many countries in Europe, Asia, the Middle East and the Southern Cone of Latin America, the use of non-sterile injecting equipment by IDUs has remained the most important mode of HIV transmission, accounting for between 30% and 80% of all reported infections (Fig. 1). The potential for HIV to spread from IDUs to their non-injecting sexual partners and the wider population differs from country to country and depends on the sexual behaviour of IDUs, their partners and the community at large and on sexual mixing patterns.
As the number of HIV-infected IDUs grows in many developing and transitional countries, not only programmes for HIV/AIDS prevention and drug dependence treatment but also AIDS care and support services are facing new and increasing challenges. In many countries and regions, the twin epidemics of injecting drug use and HIV infection linked to sharing of injection equipment have already profoundly affected health, and social and economic well-being.
Figure 1. Regions in which needle and syringe sharing is the major mode of HIV transmission
Although injecting drug use is predominantly a city phenomenon, it is increasing in non-urban or semi-urban areas, along drug traffi cking routes, in economically depressed communities and among marginalized ethnic minorities. The age at which people begin to inject drugs varies considerably and depends on factors such as social cohesion, norms and drug availability. In the Commonwealth of Independent States, injecting is especially frequent among young people, with initiation starting as early as 12 years of age. Between 65% and 90% of IDUs in developing and transitional countries are men 15–35 years old. However, the proportion of IDUs who are women and girls is reported to be increasing in some countries. Although all IDUs using potentially contaminated injecting equipment are at high risk of HIV infection, specifi c populations are especially susceptible to infection. These include young IDUs, because of inexperience in obtaining clean injecting equipment; female IDUs, because of sexual risk and injecting practices over which they may have less control and because of exclusion from services; and the increasing number of drug-injecting sex workers, both male and female. Similarly, inmates of prisons and other correctional institutions are at an increased risk of HIV infection because they lack access to preventive services.
All these particularities of HIV/AIDS epidemics among IDUs, including their linkage to illicit drug use patterns, their potentially explosive spread within communities of IDUs, the risk of further spread via sexual intercourse to the wider community and the specifi c vulnerability and risks of particular groups of IDUs need to be considered when advocating for services and programmes.
Latin America Southern Cone
IDU is Major Mode of Transmission, 30-90 % of infections
North America
East Asia Southern Europe
North Africa &
Middle East
Eastern Europe & Central Asia
COMPREHENSIVE HIV/AIDS PREVENTION AMONG INJECTING DRUG USERS
Explosive epidemics have been occurring among IDUs in many different locations, but evidence shows that HIV/AIDS epidemics among IDUs can be prevented, slowed, stopped and even reversed.1 In principle, the risk of HIV spread through the sharing of infected injection equipment can be reduced if:
fewer people use drugs and especially those that are injected;
those continuing to inject drugs do so less frequently and more safely: without sharing injection equipment.
Numerous programme and service options aim to facilitate a continuum of behavioural changes among IDUs. Young people at risk of using drugs are assisted in avoiding drug use in the fi rst place and in initiating drug injecting in particular. Those experimenting with injecting drugs are encouraged to stop, to revert to other means of consumption such as smoking and ingesting or at least to inject less frequently. Those regularly injecting and dependent on drugs are offered drug dependence treatment including, where appropriate, substitution with oral drugs such as methadone. Those not willing to enter or not having access to drug dependence treatment and not in contact with health institutions are offered services through outreach and are provided risk reduction information and clean injection equipment, as well as condoms, and referral to treatment, as available.
Experience has shown that halting the epidemic requires: (i) preventing drug abuse, (ii) facilitating entry into drug treatment and (iii) establishing effective outreach to engage IDUs in HIV/AIDS prevention strategies that protect them and their partners and families from exposure to HIV and encourage the uptake of drug dependence treatment and health care. This three-part strategy is often referred to as the comprehensive package of interventions for HIV/AIDS prevention among IDUs. It may include, as individual service elements, drug abuse prevention, AIDS education, life skills training, condom distribution, voluntary and confi dential counselling and HIV testing, access to clean needles and syringes, bleach materials and referral to a variety of treatment options.2
1 For example, all Australian cities, London (United Kingdom) and Dhaka (Bangladesh) have maintained HIV prevalence among IDUs at less than 5%; the epidemic among IDUs in Nepal appears to have been delayed for several years; and HIV prevalence among IDUs in New York City, Edinburgh and Brazilian cities has fallen.
2 Preventing the transmission of HIV among drug abusers: a position paper of the United Nations System. Annex to the Report of the 8th Session of the Administrative Committee on Coordination Subcommittee on Drug Control, 28–29 September 2000. Geneva, United Nations, 2000 (http://www.unaids.org/publications/documents/specifi c/injecting/Hraids.doc).
Unfortunately, certain effective but controversial elements are neglected in many countries. This imbalance must be redressed to reach many people at the highest risk and halt HIV epidemics. Important service elements that tend to be neglected include drug dependence treatment, outreach activities and needle and syringe programmes.
Drug dependence treatment, especially drug substitution treatment such as methadone maintenance, therapeutic communities and outpatient drug-free programmes, assists IDUs in signifi cantly reducing their drug consumption and the frequency of injecting or in ceasing illicit drug use altogether. Voluntary treatment tends to be much more successful than mandatory treatment. Drug dependence treatment facilities in many developing and transitional countries have low capacity and sometimes low quality and lack serious funding support.
Outreach activities motivate and support IDUs who are not in treatment to reduce their risk behaviour, both sharing of injection equipment and sexual transmission. Research indicates that outreach activities taking place outside the conventional health and social care environments can reach out-of-treatment IDUs and increase the rate of drug treatment referrals. In many countries, outreach to IDUs is not part of recognized service packages.
Needle and syringe programmes are usually part of outreach activities and reduce the risk of HIV transmission through the sharing of drug use paraphernalia among those not in treatment. They serve as points of contact between IDUs and service providers, including from drug treatment programmes. The benefi ts of such programmes are considerable and increase further if they go beyond needle and syringe distribution to include AIDS education, counselling and referral to a variety of treatment options. Nevertheless, resistance to needle and syringe programmes remains considerable. They are sometimes believed to incite non- injectors to use drugs even though there is no evidence that such programmes increase the rate of injecting drug use or other public health dangers in the communities where they are implemented.
Further, HIV/AIDS prevention usually needs to be strengthened within the criminal justice system. HIV/AIDS prevention in penal institutions may include two distinct strategies, both of which tend to be lacking, even in severely affected countries.
Firstly, where there is increased risks of HIV transmission in penal institutions, the number of drug-dependent IDUs incarcerated should be reduced if possible.
There may, for instance, be scope to replace mandatory prison sentences for those possessing small amounts of drugs by alternatives, including community service, and offers of drug dependence treatment.
Secondly, HIV prevention and drug treatment programmes within penal institutions are important components of a comprehensive response to prevent the transmission of HIV, as injecting and dependence tend to continue in detention.
Both strategies are too rarely implemented. Programmes to prevent HIV/AIDS in prisons are often hampered by governments denying the existence of injecting drug use and sexual intercourse in institutions of criminal justice. In reality, drug use in general and injecting drug use in particular (as well as sexual intercourse between men) are frequent in such institutions in many, if not most, countries.
Available data indicate that the rates of HIV infection among inmates are signifi cantly higher than in the general population in some countries, refl ecting at least in part continued exposure to HIV among inmates.
In addition, the traffi cking, injecting (and consumption in general) of substances such as heroin, other opiates, cocaine and amphetamines are illegal in most countries worldwide. HIV/AIDS prevention and drug control policies often need to be harmonized further, for example, to avoid that punishment renders IDUs more vulnerable to HIV. A balance must be struck between public health and public order.
Another programme area that is often neglected is the lack of appropriate HIV prevention services for young IDUs. Most services concentrate on adults or those who have already injected for some time and are addicted and perhaps already infected. Especially in some regions, such as eastern Europe, many young people experiment with drugs, using drugs on weekends, irregularly and recreationally – making standard interventions that only target marginalized addicted drug users, the stereotypical “junkie in the street”, inappropriate. Similarly, female IDUs are frequently underserved.
In conclusion, drawing on policies expressed in the United Nations drug control conventions and the Declaration on the Guiding Principles of Drug Demand Reduction, United Nations human rights documents and United Nations documents on health promotion policy, the following principles and strategic approaches should be used for addressing HIV/AIDS among IDUs.
Protecting human rights is critical to success in preventing HIV/AIDS.
People are more vulnerable to infection when their economic, health, social or cultural rights are not respected. Responding effectively to the epidemic is diffi cult if civil rights are not respected.
HIV prevention should start as early as possible. Once HIV has been introduced into a local community of IDUs, it may spread extremely rapidly.
Interventions should be based on regular assessment of the nature and magnitude of drug use as well as trends and patterns of HIV infection.
Comprehensive coverage of the entire population is essential. As many individuals in the at-risk populations as possible must be reached for prevention measures to be effective in changing the course of the epidemic in a country.
The reduction of drug demand and HIV prevention programmes should be integrated into broader social welfare and health promotion policies and preventive education programmes. A supportive environment in which healthy lifestyles are attractive and achievable, including poverty reduction and opportunities for education and employment, should sustain specifi c interventions for reducing demand for drugs and preventing HIV transmission.
Drug problems cannot be solved by criminal justice initiatives alone. A punitive approach may drive the people who most need prevention and care services underground.
Treatment services need to be readily available and fl exible. Treatment systems need to offer a range of treatment alternatives, including substitution treatment, to respond to the different needs of groups of IDUs.
Developing effective responses to the problem of HIV among IDUs is facilitated by assuring the active participation of the target group in all phases of developing and implementing the programme.
Drug treatment programmes should provide assessment for HIV/AIDS and other infectious diseases and counselling to help IDUs change behaviour that places them or others at risk of infection.
HIV/AIDS prevention programmes should also focus on sexual risk behaviour among people who inject drugs or use other substances.
Outreach work and peer education outside normal service settings, and normal working hours are needed to extend services to groups that are not effectively reached by existing traditional health services. Specifi c services may be needed for young IDUs, women and sex workers.
Adequate resources are required to respond to the increase in client load that is likely to result from outreach work.
Care and support, involving community participation, must be provided to IDUs living with HIV/AIDS and to their families, including access to affordable clinical and home-based care, effective HIV prevention interventions, essential legal and social services, psychosocial support and counselling services.
THE RESPONSE TO DATE
Despite the support from international agencies and signatures on international agreements, effective programmes related to HIV/AIDS and injecting drug use comprising at least some of the key interventions mentioned here have been implemented in only about 55 countries worldwide. Even in countries that have implemented one or more effective programmes, such activities are often provided at a very small scale or on a pilot basis and not as part of a national policy.
The introduction and maintenance of such effective programmes has been vigorously opposed in many countries. This opposition has taken many forms, including:
concern, unsupported by any evidence, that some HIV/AIDS prevention activities, especially needle and syringe programmes, increase illicit drug use;
concern that methadone maintenance and other programmes are not appropriate forms of drug treatment because ending illicit drug use is not their immediate goal;
criticism that some measures are too liberal and should be replaced by punishment of drug users;
mass-media descriptions contrasting “generous” programmes for allegedly incorrigible drug users with “innocent” patients who are not drug users and are unable to obtain proper health care;
opposition from city administration and neighbourhood groups to the establishment of sites for programmes on the grounds that these services attract IDUs, diminishing the attractiveness of the neighbourhood;
perception by some health care personnel that health care treatment for IDUs wastes scarce resources on “worthless” drug users or replaces one addiction with another;
concern that emphasizing HIV/AIDS prevention programmes for IDUs compromises primary prevention within drug and abstinence-oriented drug treatment programmes;
concern that HIV/AIDS prevention among IDUs could divert resources otherwise available for preventing the sexual transmission of HIV among the general population; and
criticism, often based on limited or no knowledge of prevention programmes, that such programmes are in contradiction to the culture of a country or the tenets of a prevailing religion.
The reasons for this opposition vary according to the culture of each country, but some common themes include:
lack of or late recognition by offi cials and politicians that injecting drug use exists in a country or is of serious concern, often coupled with lack of experience in dealing with drug issues and related problems such as substance dependence (especially in transitional and some developing countries, where such problems may have been rare previously);
lack of knowledge among decision-makers regarding how quickly HIV infection can spread among and from IDUs and the evidence for the effectiveness and cost–effectiveness of prevention approaches outlined here;
traditional reliance in many countries on law enforcement mechanisms and an abstinence-only approach to “solving” drug issues (including HIV transmission related to drug use);
lack of experience or training in drug and HIV/AIDS prevention approaches among health professionals and the staff of nongovernmental organizations (NGOs);
lack of community awareness of the effectiveness of these approaches and the benefi ts of controlling and reducing HIV epidemics among IDUs;
and
lack of experience or training in advocacy and lobbying among health professionals, staff of NGOs, policy-makers and others to start, manage or promote HIV/AIDS prevention among IDUs.
This guide provides various methods to overcome these and other obstacles.
1.1 WHAT IS ADVOCACY?
Advocacy has several different defi nitions, all of which state that advocacy aims at infl uencing decision-making with the goals of developing, establishing or changing policies and of establishing and sustaining programmes and services.
For the purposes of this guide, advocacy is defi ned as in Box 1.
Box 1. Defi nition of advocacy
Advocacy for HIV/AIDS prevention among IDUs is the combined effort of a group of individuals or organizations to persuade infl uential individuals and groups and organizations through various activities to adopt an effective approach to HIV/AIDS among IDUs as quickly as possible. Advocacy also aims at starting, maintaining or increasing specifi c activities to a scale where they will effectively prevent HIV transmission among IDUs and assist in the treatment, care and support of IDUs living with HIV/AIDS.
Policy is another critical term. Policy can be defi ned as how societies and their institutions deal with any issue. Policies may be written (such as laws) or unwritten (for example, etiquette or social mores). Policy can be formal (a national AIDS strategy) or informal (the fact that some workplaces do not want to employ people living with HIV/AIDS). Informal policies are often referred to as (policy) practices. Public policy tends to be formal and written and includes statements, policy papers or prevailing norms and practices established by those in authority to guide or control institutional, community and sometimes individual behaviour.
Advocacy has no exact equivalent in some languages. Translators and interpreters in each language need to decide which word (or words) most closely approximates advocacy in English.
1.2 PRINCIPLES
The principles of advocacy work on HIV/AIDS among IDUs are as follows.
ADVOCACY ACTIVITIES SHOULD AVOID INCREASING HARM
When change is sought to an existing system, those advocating change may not be able to control all of the results. Advocates for HIV/AIDS prevention among IDUs must therefore avoid increasing harm to IDUs. For example, local police may allow a specifi c activity such as outreach on the condition that police are able to observe and, if they like, arrest clients of the programme, or the programme has to provide a list of IDUs in that locality with their names and addresses. Such a system would
1. ADVOCACY:
OVERVIEW AND PRINCIPLES
PART 1
not only destroy the programme’s credibility with drug users but would increase harm to the clients of the programme because drug users’ exposure to HIV may increase through arrest and incarceration. Measures would therefore have to be taken to reach an agreement with the police to avoid such an outcome.
Another common problem is harm caused to an individual advocate. For example, to gain mass-media focus on issues related to HIV/AIDS and drug use, an individual IDU could be enticed to speak publicly on television, including stating that he or she is an IDU. This could lead to serious consequences, including prosecution, which the advocacy organizers should foresee and prevent. A drug user should clearly consent to being presented in this way and understand all possible consequences of the decision before appearing in public.
ADVOCACY ACTIVITIES SHOULD AIM TO PROTECT THE RIGHTS OF IDUS AND PEOPLE LIVING WITH HIV/AIDS
IDUs are often denied basic human and legal rights. Advocates should carefully examine and research these issues and collect evidence to make an appropriate case. Human rights issues can often be an important entry point to discussing specifi c issues such as access to care and treatment, information and resources.
ADVOCACY ACTIVITIES SHOULD BALANCE SHORT-TERM PRAGMATIC GOALS WITH LONG-TERM DEVELOPMENTAL GOALS
This point is central to many of the arguments that advocates make about HIV/
AIDS prevention among IDUs. Many people in every society want a complete and lasting solution to the use of illicit drugs, usually meaning that no young people will begin to use illicit drugs and all current drug users will stop using.
Achieving this goal would take many years or even decades, and some people believe it will never be achieved. Achieving this may also require the massive reduction of many other social problems such as unemployment, poverty and sexual, social, gender and racial discrimination.
However, protecting IDUs from HIV transmission requires putting programmes and policies in place in the short term. It is therefore necessary to accept that there are IDUs in a society who will not immediately stop injecting and that some young people will probably start injecting each year. The emphasis of advocacy efforts must therefore be on short-term pragmatic goals, such as keeping current IDUs uninfected and alive, without losing sight of the longer- term goals such as demand reduction or a drugs free society.
THE OBJECTIVES OF ADVOCACY MUST RELATE TO APPROACHES AND ACTIVITIES SHOWN BY RESEARCH TO BE EFFECTIVE IN ADDRESSING HIV/AIDS AMONG IDUS
It may seem obvious, but all advocacy activities must work towards implementing programmes that research has shown to be effective. There have been widespread advocacy campaigns in some countries for approaches that have not been shown to be effective in preventing HIV transmission among IDUs. Advocates need to be
PART 1
aware of the research basis of approaches and to keep up to date with new research and new ideas related to preventing HIV/AIDS, as outlined in the introduction.
ADVOCACY ACTIVITIES SHOULD CONCENTRATE ON BOTH HIV/AIDS PREVENTION AMONG IDUS AND ON TREATMENT, CARE AND SUPPORT
Prevention and care approaches to HIV/AIDS are mutually reinforcing in several ways. Comprehensive, high-quality care services, which imply the availability of medicines, create a receptive audience for prevention messages, and effective prevention ultimately reduces the demand for care services. Such a comprehensive approach helps to build trust and reduces the stigmatization of IDUs. IDUs should have the same access to HIV/AIDS care as all other people living with HIV/AIDS.
SPECIFIC AND TARGETED ADVOCACY ACTIVITIES SHOULD FIT THE SOCIAL, CULTURAL, POLITICAL AND LEGAL CONTEXT OF THE SOCIETY
In many ways, the advocacy approach used and the key targets of the approach depend on the overall societal context. Activities that are highly successful in one country may be diffi cult to implement and even counterproductive in another.
Countries differ substantially in history and current levels of participation by citizens, trust of institutions (such as law enforcement, criminal justice and narcotics control), health services and access to information by citizens. In addition, many countries are in transition, not just economically but also from one political philosophy to another. Strict social norms may govern the appropriate behaviour of men and women, and this may affect advocacy activities.
Throughout this guide, advice is based on the experience from a wide range of countries from many traditions and political systems at many different stages of development or transition. Advocates should know the history, society, and cultural and political systems in the country in which they are working and adapt their activities to suit that context.
ADVOCACY ACTIVITIES SHOULD TARGET DIFFERENT SECTORS OF SOCIETY AND KEY INDIVIDUALS, USING MULTIPLE ADVOCACY TECHNIQUES AT THE SAME TIME IF POSSIBLE
Successful advocates use multiple complementary strategies to achieve their goals. Many infl uential individuals and groups need to be targeted at the same time to achieve widespread implementation of and a supportive environment for HIV/AIDS prevention among IDUs.
Advocacy should also be seen as a process involving activities at various levels from the local neighbourhood or village, to the district, city or prefecture, the state or province, the country, the subregion, the region and the world. Although some specifi c advocacy activities and methods may be emphasized at a specifi c level – for example, the exchange of experience between provinces – a wide range is usually needed at any given level for sustainable, successful advocacy.
ADVOCACY SHOULD AIM AT QUICKLY ESTABLISHING SUPPORTIVE POLICIES AND LARGE ENOUGH PROGRAMMES WITHIN THE SOCIAL, POLITICAL AND FUNDING CONTEXT OF THE COUNTRY
Because HIV can spread rapidly among IDUs, time is a critical factor in advocacy efforts and in starting programmes that effectively address HIV/AIDS among IDUs. Service reach or coverage is also important, as effective approaches only prevent or stabilize and reduce an epidemic when they are carried out at a large enough scale. The exact scale depends on many local factors such as the specifi c numbers and the injecting and sexual risk behaviour of IDUs. This means, for example, that pilot programmes should be seen as a means to an end. The pilot should show the effectiveness of an activity in the specifi c context, and the results of the pilot should be provided to target groups, leading to policy change and introduction of the activity at an effective scale.
ADVOCACY SHOULD BOTH LEAD TO ESTABLISHING NEW POLICIES AND PROGRAMMES AND REACT TO HOW INSTITUTIONS, THE MASS MEDIA AND OTHERS DEAL WITH HIV/AIDS AMONG IDUS
The advocacy process should be considered not only in terms of working towards the goals set by the advocacy group but also in reaction to unfolding events.
At each level where advocacy is carried out, events may occur that lead to new opportunities for advocacy. For example, a politician may fi nd out that his son or daughter is using drugs or a newspaper survey may fi nd that many citizens are concerned about increasing drug use among young people. Advocates need to monitor current events to look for these opportunities and have the resources available to take advantage of opportunities.
Opposition to HIV/AIDS prevention among IDUs is often expressed. Advocates need to be ready with evidence and appropriate channels of communication to ensure that opposition is quickly responded to and should respond in a strategic manner.
ADVOCACY ACTIVITIES SHOULD INVOLVE, TO THE EXTENT POSSIBLE, IDUS AND PEOPLE LIVING WITH HIV/AIDS IN PLANNING, IMPLEMENTING AND EVALUATING PROGRAMMES
In a context where IDUs and people living with HIV/AIDS may be able to be involved in discussions with authorities without increased personal risk, they must play a leading role in designing, implementing and evaluating advocacy activities and programmes. This involvement increases the speed with which programmes can assist IDUs and people living with HIV/AIDS and leads to higher programme quality.
In accordance with the fi rst principle of avoiding increasing harm, however, IDUs and people living with HIV/AIDS should not be involved if this will most likely lead to identifi cation, arrest or compulsory treatment or violence. If conditions
PART 1
for IDUs and people living with HIV/AIDS make attending meetings and working on advocacy or programme planning dangerous for them, outreach workers should seek their views through other lower-profi le methods.
ADVOCACY ACTIVITIES SHOULD CONSIDER DIFFERENCES BETWEEN GROUPS OF IDUS ACCORDING TO GENDER AND ETHNIC BACKGROUND AND TO VULNERABILITY TO HIV/AIDS AND PROMOTE EQUITY IN TREATMENT, CARE AND SUPPORT
In many countries, gender and ethnic differences among IDUs are not well understood and assumptions are made that most or all IDUs are male and that there is little difference between IDUs. Drug use, especially drug injecting, by women and girls may be more hidden than male drug use because of cultural factors and a lack of female-specifi c services that might attract female drug users. Also, depending on cultural rules, the signifi cance of injecting drug use may differ in different ethnic groups. Advocacy activities should seek to expand the knowledge base of drug use by male and female IDUs and ensure that both advocacy and the implementation of services take into account gender and ethnic differences.
1.3 ADVOCACY STEPS
Advocacy usually starts when a group of concerned people perceives an issue as being so problematic that they decide that it should be put on the public agenda with the aim of addressing the problem. Advocacy includes developing possible proposals to solve the problem and building support for acting on the solution. This process consists of a set of steps, carried out for different aspects of an issue at many levels of society simultaneously in varying order. These steps may include starting up, analysis, strategy, action and reaction and evaluation.
Starting up. A formal or informal advocacy group or coalition is formed.
Specifi c funding for advocacy, which is usually needed, should be sought at this stage or at any of the next three steps.
Analysis. The group analyses the identifi ed problem more systematically, including key stakeholders, existing norms and policies, the implementation or non-implementation of these policies, the organizations involved in putting those policies into practice and the channels of access to infl uential people and decision-makers. The more familiar with the situation the advocates become, the more persuasive the future advocacy can be.
Strategy. Every advocacy effort needs a strategy; in this step, potential solutions to a problem are formulated and the process of arriving at these solutions is envisaged. The strategy phase builds on the analysis to direct, plan and focus on specifi c goals and to position the advocacy effort with a clear path to achieve these goals and objectives.
Action and reaction. An advocacy action plan is formulated, and support is built for changes to policies and practices. Implementation of the campaign may arouse various reactions by decision-makers and infl uential groups. Reacting to critics of the advocacy goals helps to keep attention and concern on the issue.
Evaluation. Since advocacy often provides partial results, a team needs to review regularly what has been accomplished and what more remains to be done. Process evaluation, such as assessing whether progress has been made in identifying advocacy allies, may be more important (and more diffi cult) than evaluating the impact on actual decisions. Evaluation should be used as the fi rst step in reanalysis, leading to an ongoing cycle of advocacy work and evaluation.
The advocacy process is shown in Fig. 2.
Figure 2. The advocacy process
Advocacy is therefore a dynamic process involving changing actors, ideas, agendas and policies. The stages of the advocacy process must be viewed as fl uid because they may occur simultaneously or progressively or the process may stall or reverse itself. Three case vignettes (Boxes 2–4) illustrate that successful advocacy needs to reach the many individuals and groups in a society who can infl uence HIV/AIDS and drug policies and should carefully monitor political shifts to quickly and effectively address groups with growing infl uence.
Advocacy group formation
Analysis
Evaluation Strategy
Fund raising
Action and Reaction
PART 1
Box 2. The advocacy process: Jakarta and Bali in Indonesia
In Indonesia, evidence began to emerge in the late 1990s that injecting drug use was increasing rapidly and that HIV was spreading among IDUs. Activities by the Government of Indonesia and NGOs appeared to have little chance of preventing a massive epidemic of HIV among IDUs, because neither was familiar with HIV/AIDS prevention among IDUs. Further, those working on HIV/AIDS expressed their concern that the Indonesian community and government officials would oppose some specific approaches such as needle and syringe programmes or substitution treatment, because of legal reasons and lack of awareness of the effectiveness of such methods.
In 1999, a coalition of NGOs and donors decided to form an advocacy group to lobby for acceptance of these approaches in Indonesia. In early 2000, the group supported a training course on rapid assessment and response methods, which led to assessments of injecting drug use and of the dissemination of HIV infection in eight cities. The assessments were used to provide information for further advocacy work as well as data to help in planning interventions.
Initial results from these rapid assessments were presented to key government officials and NGOs in each province assessed. Final results were presented at provincial and national seminars, leading to increased interest in issues related to HIV/AIDS among IDUs.
Specific advocacy groups were formed in Jakarta (national) and Denpasar (for Bali Province), and these teams identified potential allies and opponents of advocacy with regard to new approaches and developed objectives for their work. The core teams used the rapid assessment results to persuade influential individuals and groups that HIV/AIDS among IDUs was a serious and growing problem in their area and in Indonesia as a whole and to encourage the implementation of preventive activities. Other studies backed these results by showing worrying trends in HIV transmission among IDUs and prisoners, which received wide mass-media coverage. Workshops were organized to concentrate political and community attention on the issue. Key politicians were contacted many times to build support for changes in government policy and the introduction or expansion of pilot outreach, methadone and needle and syringe programmes.
In 2001, a study tour to Sydney, Australia was organized for senior government and NGO officials to visit a wide range of programmes related to drugs and HIV/AIDS and to consult with senior police, politicians, a High Court judge and representatives of the Department of Health in that country. During this study tour, the participants decided to form a Harm Reduction Steering Committee for Indonesia (mostly comprising government representatives) and the Indonesian Harm Reduction Network (chaired by an NGO in Bali).
By mid-2002, several further advocacy activities for HIV/AIDS prevention were underway in Indonesia.
The Harm Reduction Steering Committee members met regularly and assisted in building relationships between health sector staff and police and other important community members.
The Indonesian Harm Reduction Network received funding to begin capacity- building and networking activities.
Six programmes (in four cities) were started to provide, through outreach, HIV/
AIDS prevention, education and information materials to IDUs.
Pilot programmes for needle and syringe provision were prepared for three sites in Jakarta and for both Denpasar and the rest of the island in Bali. The Indonesian government agreed to consider such programmes an integral part of its national HIV and drugs policy, subject to the successful evaluation of the pilot programmes.
Two pilot methadone programmes, also approved by national and provincial governments, were planned.
A larger advocacy campaign for HIV/AIDS prevention among IDUs began through national meetings aimed at specific target audiences such as police, criminal justice staff (including judges, lawyers and prison officials), religious leaders and the mass media.
At the end of this process, several prevention programmes using new approaches had been initiated, although a degree of scepticism remained among staff of certain sectors of the government.
Sources: Ruddick A et al. Advocacy for harm reduction and 100% condom use in Indonesia.
6th International Conference on AIDS in Asia and the Pacific, 6–11 October 2001, Melbourne, Australia; and personal communication, Ruth Birgin, Advocacy Programme Co-ordinator, Centre for Harm Reduction, Jakarta, Indonesia.
Box 3. The advocacy process: countries in central and eastern Europe and the Commonwealth of Independent States
When HIV started spreading rapidly among IDUs in an ever-increasing number of cities in Belarus, Kazakhstan, the Russian Federation, Ukraine and other countries in the eastern part of the European Region during the mid-1990s, governments were ill prepared to face this new threat. The number of young people injecting illicit drugs, especially opiates and amphetamines, had been rising rapidly, and HIV infection had entered many communities of IDUs. Drug dependence treatment services were limited in capacity and not designed to care for the large number of opiate users. Partly because of their experiences under communism, IDUs mistrusted authorities, including government health institutions, and most therefore even kept away from health services. In this situation, International Harm Reduction Development Programme (IHRD), was one of the first international agencies to offer support. Funds were offered to local authorities and health services, both government and NGOs, on a competitive basis, to establish outreach, information and needle and syringe exchange services. Many cities accepted these offers and submitted proposals, even though there often was no national guidance as to whether such new approaches should or should not be embraced. Several local authorities issued statements opening the way or explicitly supporting this new type of service for IDUs. At the same time, the police continued to harass many IDUs, even those attending the newly created “trust points” or needle and syringe and information outlets for health reasons.
PART 1
Later during the 1990s, the number of methadone pilot projects IHRD funded also increased throughout this region. A group of IHRD technical consultants was also involved in training courses, and there were exchange visits for staff of drug dependence treatment centres interested in starting in such projects.
In 2001, concerned that national governments in the region were not sufficiently scaling up the more than 150 small IHRD programmes, IHRD established a regional Policy Initiative.
The Policy Initiative promotes the harm reduction philosophy, public health values and respect for human rights and advocates for policy shifts towards less repressive and more supportive approaches towards HIV/AIDS prevention among IDUs throughout the region.
It is an integral part of IHRD’s overall three-part strategy of direct support for services;
training and capacity-building; and public policy and advocacy. Policy Initiative activities are closely linked with all three components.
The Policy Initiative builds on the efforts of those engaged in harm reduction and HIV prevention among IDUs and makes new and strong alliances with human rights activists and civil society. Through these efforts, IHRD hopes to bring harm reduction into the mainstream of drug policies so that it is no longer seen as controversial and marginal.
There are now some good examples of government support for effective harm reduction in this region, at least partly resulting from the advocacy efforts of IHRD as well as assistance provided by the United Nations, bilateral donors and other NGOs, including Médecins Sans Frontières–Holland, the AIDS Foundation East-West and Médecins du Monde (Doctors of the World). In Poland, the national government pays for outreach workers at most needle and syringe programmes throughout the country. In Bulgaria, the Bulgarian national AIDS programme recently included harm reduction principles. In Ukraine, the national AIDS policy states that all IDUs should have access to clean needles and syringes, and several provinces and oblasts are investing in outreach to IDUs and information and needle and syringe exchange themselves. In Estonia, Kyrgyzstan, Latvia, Lithuania and Poland, methadone has been registered, and in most other countries in this region (except for the Russian Federation), the process of introducing substitution treatment and registering the medicine (either methadone or buprenorphine) is underway.
Current IHRD Policy Initiative activities include supporting the establishment of self-help groups for drug users and people living with HIV/AIDS; supporting the participation of influential individuals in international events dedicated to drug policy; study tours for police and criminal justice officials; police training; support for harm reduction networks;
advocating for methadone substitution; research on legal and other impediments to harm reduction; publishing and distributing harm reduction materials; and active cooperation and partnering with other Open Society Institute programmes and national foundations, United Nations agencies, governments, NGOs and others.
Source: IHRD Policy Initiative Presentation to OSI Public Health Sub-Board, November 2001, unpublished.
Box 4. The advocacy process: failure of advocacy
Advocacy processes are not always successful. As no country wishes to be distinguished by its lack of action to prevent a HIV/AIDS epidemic, this case study will refer to Country X.
In Country X, the fact that HIV was spreading rapidly among IDUs became evident.
Nongovernmental organizations persuaded the Health Ministry to allow them to provide funding for training on HIV/AIDS prevention and to set up pilot programmes. For more than a year, health professionals were trained and, after discussions with local officials, many pilot programmes were established. The Health Ministry approved the prevention projects and made them part of its AIDS strategy.
Four years passed and the epidemic among IDUs continued to grow. Few government resources were provided for prevention activities, and public statements of support by the Health Ministry became fewer. Increasingly, public statements by the Ministry of Police became more critical towards HIV/AIDS prevention among IDUs, saying that IDUs disturb public order and engage in illicit activities. A powerful religious organization then added its voice to the criticism: and the mass media, which had been generally supportive, increasingly reported only criticism. All of the previous training and pilot programme work was threatened with collapse, despite clear evidence that the programmes would have had an impact on the epidemic if only the government had provided funds to implement them at a large enough scale. However, the government chose to spend its AIDS budgets on other matters, including general HIV/AIDS awareness-raising and surveillance, neglecting practical HIV/AIDS prevention work among IDUs. The most senior levels of government rarely mentioned HIV/AIDS related to drug use and only spoke of drugs as a scourge that must be cleansed from the country. At the end, approvals for the pilot projects were not renewed, and many closed down.
What went wrong in Country X? Five factors appear to have been most important. First, no broad coalition was built to advocate for HIV/AIDS prevention and no systematic campaign was undertaken. Although the NGOs recognized early in their work that advocacy would be needed, the tasks of training and starting pilot programmes were so overwhelming that little time was left for advocacy. Potential coalition partners were unconvinced that HIV/AIDS prevention among IDUs could be successfully implemented in Country X, due to its history of opposing such ideas. Only after several years of evidence of their effectiveness did the coalition partners become interested in expanding these activities. By this time, the backlash had begun and potential partners feared that their involvement in effective activities could threaten their other HIV/AIDS programmes and activities.
Second, there was little history of organizations working together on issues that crossed provincial borders, boundaries between scientific disciplines – for example, substance dependence and HIV epidemiology – and sectors of the government, such as law enforcement, health, criminal justice and social welfare. Organizations that could have become partners often had no access to computers, the Internet or fax machines, and there were few existing networks that could be used to foster cooperation.
Third, the police were rarely involved in the training and initial advocacy process, except at the local level, where pilot programmes were established. The importance of police collaboration to the long-term sustainability of programmes related to illicit behaviour such
PART 1
as drug use was understood, but resources to train and educate them were not available.
Health professionals and the Health Ministry are of lower political importance in Country X than the Ministry of Police. The police, therefore, should have been included in education and advocacy efforts from the beginning, as they could shut down programmes started by health officials or NGOs at any time.
Fourth, the religious organization mentioned above was not involved in discussions about HIV/AIDS among IDUs. An assessment early in the training project found that the religious organization had little power or influence in the country. However, during the five years described here, the organization grew much stronger, especially through its links to the main political parties. When the religious organization decided to express criticism of the advocated approaches to HIV/AIDS prevention among IDUs, it had many channels by which it could ensure that its messages reached the highest political levels. Because of a mistake in the initial assessment and a lack of monitoring and regular reassessment, the religious organization was not approached until after it had widely published its concern. Publication of the criticism now became an entrenched position for the organization and, despite some advocacy attempts at this late stage, the organization was unwilling to change its position.
Finally, and related to the other factors, there was a failure to reach those at the highest levels of government. The experience of many countries has shown that political will by the head of state can have an enormous impact on a country’s response to a HIV/AIDS epidemic. Without a clear statement from the highest levels, law enforcement officials and the religious organization believed that they were allowed or even supposed to oppose and criticize those providing outreach services to IDUs. After this negative press coverage, the head of state was even less likely to publicly approve or widely implement appropriate activities. Again, the need to gain support from the highest level of government was understood, but no effective method was ever found of reaching these people.
PART 2
To illustrate these various steps and show them in real life, the example of the fictitious City Z has been developed.
City Z is a residential district of 100 000 people with many IDUs. The district is poor, and IDUs have few formal employment opportunities except for occasional casual work. The district has one hospital, a community health centre and several NGOs working on HIV/AIDS and drugs, including one promoting general community awareness of HIV/AIDS to all district residents and one providing drug treatment in a therapeutic community. In addition, the district has 80 police staff, local politicians, informal community leaders and some small businesses.
Drug injecting is new to the district; most residents can remember a time about a decade ago when hardly anyone injected drugs. Now, drug trafficking seem to be a main source of income for some people, and there are IDUs in many families. Residents of the district are angry that these drug users congregate at various places such as an abandoned warehouse, under a bridge and at some of their homes. Politicians and residents encourage the police to get rid of the drug problem in the district, and the police have responded by arresting alleged drug traffickers and users wherever possible or encouraging them to leave the district, but they have not yet been able to catch the main dealers. Health professionals at the hospital and community health centre and workers of the NGO believe that drug addiction is a problem but have found no reason why HIV/AIDS among IDUs should be considered very important. Like other members of the community, they want drug users to simply stop using drugs or move away.
2.1 ADVOCACY GROUP
Advocacy efforts usually start when people become concerned about the threat HIV/AIDS poses to IDUs, their families and their communities. That could be at the beginning of a potential epidemic or at a stage when the epidemic is already well established. Most often, such people are working in the fields of HIV/AIDS or drug use and already have some access to information on injecting drug use and HIV/
AIDS. For example, staff of hospitals or health care centres may observe a growth in the number of people with symptoms related to HIV/AIDS or infections related to needle-sharing such as hepatitis C. Outreach workers may notice a change in drug consumption behaviour from inhaling or smoking a drug to injecting.
Parents or friends of drug-dependent young people may have heard about a new type of infection affecting drug users. In many cases, government officials or staff of international organizations come across some epidemiological data, such as sentinel surveillance reports, and think that something needs to be done.
Usually such concerned people begin advocacy work by raising the issues, pointing out the dangers of an HIV/AIDS epidemic among IDUs, searching for more information and suggesting some new interventions. However, such informal advocacy does not go very far, because it does not implement a systematic campaign and reach the audiences that can change policies and develop appropriate programmes.
2. STARTING UP
The first step towards more formal and systematic advocacy is usually to establish an advocacy group. This can be a group of only two or three people or it may include 10 or more. Interaction is generally easier if the group remains fairly small. The purpose of this group is usually to plan and oversee advocacy tasks, carry out analysis and specific advocacy activities and act as spokespeople for the mass media in case they and others want to contact the group.
The role and activities of the advocacy group depend on the level – community, provincial or national – at which the group is operating and the emphasis they place on advocacy. In the example in Indonesia (Box 2), nongovernmental and funding organizations involved in HIV/AIDS programmes formed an advocacy group. This group broadly aimed to advocate for greater emphasis on injecting drug use in HIV/AIDS programmes and to sensitize policy-makers about effective HIV/AIDS prevention among IDUs and about what has worked in other countries.
This type of national-level group often has many tasks, of which advocacy for HIV/AIDS prevention among IDUs is just one. They also address issues related to sex work, men who have sex with men and more general issues related to developing national strategy. By contrast, the groups at the provincial levels (in Jakarta and Denpasar) were formed specifically to work on advocacy for HIV/
AIDS prevention among IDUs. These groups had narrower objectives related to the situation in each province and sought to persuade relevant officials to implement effective programmes and to ensure that all sectors of government, together with NGOs, collaborated to facilitate this implementation.
Similarly, where advocacy groups establish themselves at the local level, they usually aim to gain support for very specific activities to be carried out by local organizations. The aims here are narrower still, such as trying to gain political and community support to allow a project or programme to open and ensuring that outreach workers who provide IDUs with HIV/AIDS information materials and clean injecting equipment are not arrested by police.
Advocacy is often required at several levels simultaneously. Advocating for a local programme is difficult when the national government has passed a law prohibiting specific activities. Working towards a national change in laws or policies is also of little immediate use if this will not be reflected in increased programming at the local level. Advocacy at one level influences advocacy at other levels, and the cooperation of different people at different levels increases the leverage to implement or maintain effective policies and programmes.
The best way to ensure an effective advocacy group depends on the social, cultural and political context in the country, the specific activities the group plans to undertake and at what level the group plans to work. The group should start small and grow larger by seeking people with the specific skills needed for advocacy tasks. These skills are normally identified during the analysis phase.
Generalizing about the qualities to be sought in members of the advocacy group is difficult. However, at least some members should:
PART 2
be able to understand and interpret scientific literature;
be and be considered leaders;
have experience with drug use and HIV/AIDS;
understand how policies develop within the cultural, social and political context within which the group is working;
be aware of and understand cultural norms that relate to gender, ethnicity and sexual orientation of IDUs and people living with HIV/AIDS and how attitudes and cultural sensitivities may affect programmes and activities;
be able to raise and account for funds, if needed; and
be available and “appropriate” to address the public, including through mass media.
Leadership is an important issue to consider. Some advocates may be people who are only interested in HIV/AIDS and injecting drug use and in helping IDUs – such as parents of IDUs or their partners – but lack formal qualifications such as academic degrees or positions of authority. Such a group may have difficulty in gaining access to the mass media, politicians, policy-makers and others and in being accepted by target audiences.
At least one member of the advocacy coordination group should be a community leader of some type. This person might be a professor of public health, epidemiology, psychiatry or some related discipline; a political leader or someone well known in political circles; a retired policy-maker; a prominent businessperson; the son or daughter of prominent people; or a celebrity whose opinions are valued in the community, city, region or country (Box 5).
Box 5. Membership in a national advocacy group
In one Asian country, an NGO was able to establish a drop-in centre for IDUs despite political resistance because a member of the organization was the daughter of a health minister and granddaughter of a chief minister. Through her links with politicians, the daughter of the president also became an advocate for HIV/AIDS prevention among IDUs.
Likely members of an initial advocacy group at the local or national levels could include:
physicians, other health workers and lawyers;
parents and partners of IDUs;
IDUs, including those living with HIV/AIDS and former IDUs;
drug treatment centre staff, outreach workers, social workers and other staff of organizations working with disadvantaged groups; and
representatives of other civil society organizations, academics and/or the mass media.
In addition, representatives may be sought, if feasible, from police, narcotics control, public security, the business sector, religious groups, women’s groups and international organizations. Potential members of the advocacy group sometimes need to be informed and sensitized about HIV/AIDS prevention among IDUs. Many people have little or no knowledge of this field, so the information in section 1.3 may be useful in persuading colleagues to become members of the group.
Establishing an advocacy group in City Z. In the district of City Z, two people have become increasingly worried about the rapid spread of HIV among IDUs: A.C., a woman physician working at the community health centre and E.B., the director of the NGO carrying out general HIV/AIDS awareness-raising in the district. Knowing that there are IDUs in their district, A.C. and E.B. have decided that they should form an advocacy group to make the municipality focus on HIV/AIDS prevention, treatment, care and support.
They organize a small meeting with colleagues who work in various agencies around the district at which they discuss the situation of IDUs and their risk of contracting HIV/AIDS. A.C. presents some international research fi ndings about how HIV spreads among IDUs, the urgent need to stop this spread and details of approaches to HIV/AIDS prevention that have been effective elsewhere. E.B.
explains that a joint effort by an advocacy group is needed to overcome the many obstacles to introducing such prevention approaches in City Z.
The group discusses these ideas, and some group members think that focusing on IDUs is wrong, as the district has so many other problems. A.C. and E.B.
argue that experience has shown that HIV/AIDS epidemics could overwhelm health systems with AIDS 5–10 years after the initial epidemic has occurred.
Unless HIV/AIDS is brought under control, a massive wave of AIDS cases can occur that will dwarf all the country’s other health problems. Eventually, two other district residents, a woman whose son is an IDU and a journalist from the city’s main newspaper, choose to join the advocacy group.
This small group works at first just to inform other concerned people and organizations in the district about the group and the need to work on HIV/AIDS among IDUs; in this way, over time, a coalition begins to emerge. The advocacy group asks A.C. to be the group’s spokesperson and to chair meetings of the group to formulate a strategy to address the issue.
The two examples above describe advocacy groups at the city and national levels. Box 6 illustrates the establishment of the Asian Harm Reduction Network, which has as one of its main objectives advocacy campaigns in various countries in Asia.3
3 Asian Harm Reduction Network. Supporting responses to HIV and injecting drug use in Asia. Geneva, UNAIDS, 2001 (http://www.unaids.org)
